Diagnoses Pervasive Developmental Disorder-.Please Explain

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Hi:

I posted on here awhile back regarding my 5 now 6 year old son possibly having Aspergers.Here is the post (http://www.wrongplanet.net/postt127594.html) Well after going rounds with a local Aspergers/Autism Diagnostic center we finally received a Bureau For Children with Medical Handicaps Letter of Approval in the mail today. Listed as diagnoses were the following:

ICD: 315.39 Speech/Language Dis OT
ICD: 299 Pervasive Develop Dis
ICD: 315.31 Expressive Language Dis

I was wondering if anyone has experience with explaining to me the difference between PDD and PDD-NOS. I also found this article on Wikipedia that explains the difference which I will post below. However I am so confused if his dx is Autism related and if it is still considered on the spectrum? If anyone has been diagnosed with PDD can you please help me with its definition and what type of treatment you have gone through. Thank you so very much! Ali

PDD and PDD-NOS Wikipedia Definition.......

There is a division among doctors on the use of the term PDD.[2] Many use the term PDD as a short way of saying PDD-NOS.[2] Others use the general category label of PDD because they are hesitant to diagnose very young children with a specific type of PDD, such as autism.[2] Both approaches contribute to confusion about the term, because the term PDD actually refers to a category of disorders and is not a diagnostic label.[2]

PDD is not itself a diagnosis, while PDD-NOS is a diagnosis. To further complicate the issue, PDD-NOS can also be referred to as "atypical personality development", "atypical PDD", or "atypical Autism".

Because of the "NOS", which means "not otherwise specified", it is hard to describe what PDD-NOS is, other than its being an autism spectrum disorder (ASD). Some people diagnosed with PDD-NOS are close to having Asperger syndrome, but do not quite fit. Others have near full fledged autism, but without some of its symptoms. The psychology field is considering creating several subclasses within PDD-NOS.

In short: it doesn't matter.

All autism spectrum disorders are pervasive developmental disorders. PDD-NOS is just a way of saying they don't meet all of the criteria, but are still clinically impaired and have autistic symptoms. Your child is autistic.

Doctors don't like to give a specific one (like autism, or Asperger's) because children that young sometimes "grow out of it" or don't meet the criteria later. I would assume they're just saying your child has autism without giving a specific label.

Yes, exactly. PDD-NOS is known as "atypical autism", and it makes up a majority of autism cases. These are the cases that don't fit specifically into any given category, either because they fit into more than one, because there are too few symptoms or too many symptoms from one category and not enough in another (though this says nothing about the severity of the symptoms), or because evaluation was difficult for some reason or another (unusually young child, absent childhood history, other complicating conditions, etc.).

So, basically, just call it autism, or pervasive developmental disorder, and you'll be about as accurate as it's possible to be.

As far as we know, the next edition of the DSM will merge the autism spectrum, and we will all have a diagnosis of "autism spectrum disorder", though whether they will be using severity levels remains to be seen.

Thank you both for your replies. I am still a little confused, especially since it mentions the following DD is not itself a diagnosis, while PDD-NOS is a diagnosis." Does this mean that PDD is not billable nor covered under insurances because it is not considered a diagnoses? And if this is the case, why does the ICD-9 criteria for ICD: 299 say it is an official diagnostic code if is not a diagnoses? I am so overwhelmed and awstruck by this letter we recieved especially because the PHD we spoke with told us he was no where near the spectrum and they were only going to diagnose him with Anxiety. I went rounds with this PHD and told him he was completely wrong about my son. We had tons of paperwork we had to fill out for his testing, in which they did not score it until we were at our last appt with them and they scored it because we insisted on wanting to know the results. The one paper that was filled out by us as well as his teacher came back as Pervasive Develop Disorder as the highest score. And then the other paperwork we the parents had to fill out for our son came back as over and off the charts Aspergers. He has to score 90 and below and he was over 90. I asked the PHD to explain then why they were only dx's him with Anxiety if he completely met the criteria for Aspergers and he said because we do not see him having Autism in our evaluation with him for the last hour only Anxiety problems. I got so angry and basically walked out and told him that their is no way he can say my son does not have some sort of Autism related disorder....

And then today, I get this letter in the mail with a dx code of 299 which is Pervasive Developmental Disorder....what in the heck, does this mean he is autistic or not. I will be so happy the day that they group everything together as Autism.....UGGGHHHHH

Thanks,
Ali

PDD means exactly what it stands for, in this case:
A developpmental disorder.
Your medical company sent you a list of 3 PDDs that your kid has.
You can get assistance, I believe, for therapies directly handling those issues.
I doubt you'll get any autism disability support.

At the time being, until a few more years have passed, dealing with those three categories and getting help with those three PDDs is the best thing to do for your child. It's really all you would do (educationally) for an Aspie child of that age anyways (I think?), so unless there's serious money in an autism diagnosis, there's no need to pursue it farther. And I really hope you aren't doing this for money.

Edit: If there ARE other issues you believe your kids have, then by all means ask us about how to deal with them. You'll get lots of oppinions and advice. Most likely better advice and the much more viable experience-based advice (from the inside viewpoint) than you'd get out of any shrink.

Hi, thanks again for responses. I am not sure what you meant, if I am doing this for money? Me asking questions about my son's diagnose has nothing to do with money. I just needed an explanation due to the previous post I wrote stating that PDD was not a diagnoses. however PDD-NOS is. Therefore I thought maybe it meant that any type of treatment for PDD was not covered by insurance (which we have). I did not even know what the Bureau For Children with Medical Handicaps Letter of Approval even was until I looked it up last night. The entire last 2 years has been a learning curve for my family and I. We knew nothing about Autism or Autism Spectrum disorders until we spoke with our Ped and a different PHD who suspected the dx. I am going to assume and provide care for our son as if he has been dx'd with a spectrum disorder, and I am hoping that the older he gets the more apparent and clear cut a dx will be able understood.

Hi, Thought I'd jump on this thread since I am officially diagnosed with PPD-NOS.

Here's a website that explains things better: http://www.autism-help.org/pdd-nos-overview-autism.htm

First of all, I want to say that I can see where the diagnosis process has been overwhelming for you from what you have said so far. My mom went through diagnostic loopholes for some medical issues for me when i was younger and it caused her difficulties, so on her behalf, other people have been there.

To be diagnosed with Aspgerger's Syndrome, a person shows social difficulties and stuff like stims or special interests but does not have a speech delay. To be diagnosed with autism, there has to be a speech delay.

Using myself as a case study, I didn't talk until I was 2. I was also adopted from an orphanage oversees, so the early sensory deprivation complicates things. But because no one knows whether my speech delay would've happened even if I was given proper attention in a home, I couldn't be diagnosed with Aspergers.

Then why wasn't I diagnosed with Autism (high functioning)? Though I have issues with social interactions, I don't seem to have as much of a struggle with empathy and accessing my emotions that many people with autism do.

Therefore, PPD-NOS fits because I don't meet the criteria for Aspgergers, and I have 'sub-threshold' symptoms for classic autism. Hope this example helps! PM me if you have any questions I guess?

OddFiction may be referring to the way that some school systems get more funding for an "autism" or "developmental disorder" diagnosis than an "Asperger's" diagnosis. The coding systems don't match up between the psychologists and the schools, and it can get confusing. Some doctors will diagnose PDDs a certain way because they know that the insurance companies or schools will give more money for accommodations for one category than another. For example, in some places, "Asperger's" children get very little, but "Autistic" children with near-identical symptoms except for a history of speech delay would get a full one-on-one aide and funding for technology and therapy besides. Could be that your school district codes autism as a "developmental disorder"...

Is PDD and PDD-NOS the same thing? Or are they saying they are not sure which of the 5 he has or a combination of them? I thought if they did not know exactly which one it was they would call it PDD-NOS and code it 299.99 but they coded it 299 which is not the same as 299.00 which is Autism. This is where my confusion lies.

Well... do you remember Venn diagrams for school?



OK. PDD is the whole diagram.

PDD-NOS is just the red region, the part that doesn't fit into any other circle.

Autism is a subset of PDD-NOS. That is, every case of Autism fits criteria for PDD-NOS.

Most cases of Asperger's fit criteria for Autism, but some do not. Those that do not still fit criteria for PDD-NOS.

CDD and Rett's are very rare; but because CDD involves loss of speech, it does not overlap with Asperger's. Rett's has a unique genetic marker that makes it a separate disorder.

I'm ignoring the fact that certain disorders take diagnostic precedence over others. In general, the way they are diagnosed is that you get the diagnosis that's the highest on this list:
Rett's
CDD
Autistic Disorder
Asperger's Disorder
PDD-NOS

OMG Callista that is so CLEAR.
Good answer! Awesome choice to make a diagram!


And yes, I was referring to support money. It wasn't meant to be accusatory in any way.
I didn't actually know anything about the codes. I'm thinking that 299 with no extension means Autism, but you should call the people who sent you the paper and ask them. I hate giving that as advice, because I personally hate dealing with "officials", but I don't think there's going to be a satisfying answer otherwise. Or call the medical insurance people.

From what I understand, everyone has different medical insurance companies and they don't all work the same way.

Thank you to all.....the explanations and diagrams did definitely help me understand a little clearer. I believe the older my son gets the more obvious a dx other than PDD will be available. I suppose my last question would be is my son then considered on the Autism Spectrum, is PDD part of the spectrum? Is he considered high functioning autistic?

Thank you all again for your helpful answers and for taking the time to respond. I promise I will get more knowledgeable so I in-turn can help others as you have helped my family and I.

Thank you and God Bless...

Ali

I think that for now specialists think he is somewhere on the spectrum (PDD-NOS is a form of autism) but cannot tell for sure which category he belongs in, therefore they cannot tell either whether he is high functionning or not. I think I have read that some low functionning auties become high functionning as they grow up, this may be why they do not wish to give a precise diagnosis now, diagnosing disorders in children is somewhat difficult because some children may seem to have a disorder while being normal later, and on those who have a disorder or more it can be difficult to tell which one they have (specialists have failed to label me as a child and I think I am not the only one here).

I think it's better that they take time to observe your son because many people have been misdiagnosed as a child.

Yup. PDD is another name for autism, or more specifically "autism spectrum disorder". Autistic Disorder (aka classic autism) is a kind of autism. So are Asperger's and PDD-NOS (aka atypical autism).

"High-functioning" doesn't really have a clinical meaning. It's just a name for a doctor's impression of a person's abilities; it's a very vague label because what makes the most impression on a doctor isn't very likely to be what will actually help/hinder you in everyday life. I wouldn't worry about functioning categories, really... If you wanted a more reliable scale for functioning, you could probably check the GAF number that's probably at the end of the diagnosis. (GAF=100-point scale of how well someone's coping in daily life; changes as your circumstances and coping skills change.) But remember that this scale does assume that we value the same things typical folks value, such as having many friends, superior performance at a job, etc.